I had made some comments that I want this blog to be more than just about my FMD illness, I want it to also include some background of my life so that you all may get a better understanding of the me that lies inside. I am gong to start with most recent, then back log my way into what makes me, me in a series of blog posts combined with FMD posts.
I shall start in 2009, which for me went down as just one of many of the my worst years in history. It started February 19th that year. I was 17 1/2 weeks pregnant, it was a huge surprise when I had found out, but it was certainly a happy surprise, I went to a routine baby check up. The doctor was having a hard time detecting the babies heart beat, which was unusual because all of the other appointments, it was rather strong. Because I was thirty five (an elder pregnancy) and had two prior high risk pregnancies, I had to go every two weeks for check ups from the start. I was sent over to the hospital to have an ultrasound to see if we could find that babies heartbeat. My husband at the time and I went over, we were in the room and the tech put the paddle on my already rapidly growing belly, and said "excuse me, I will be right back", I looked at my husband and started to cry, I knew something was terribly wrong. A few minutes went by, the tech returned to the room with the radiologist, which is never a good sign, and explained that a heartbeat could not be detected and there were no signs of life with the fetus. We were told at that moment, our baby had died. We were devastated to say the least. We were referred to go to one of the big hospitals in Pittsburgh as I was too far along for the local hospital to help me. The local office had kindly made me an appointment in Pittsburgh for the next morning. We went to see this doctor. Something was off about it to me from the second I walked in the door though. The staff was very cold shouldered and matter of fact and the room itself had this white, sterill, off vibe to me. The doctor entered the exam room and was very cold and unkind. I just had a feeling rush over me that something was not right about this. After the doctor very cold heartedly explained the procedure he would do, it occurred to me that this doctor wasn't an Obstetrician at all, rather he was an abortion doctor. I realized it, I asked him and he confirmed he was. I literally started screaming and crying and telling him he would not be touching me or my now deceased fetus. I kicked him out of the room, got dressed and we ran out of there as fast as we could. What did it matter at that point you may ask, I guess it really didn't, but it did matter to me.
We proceeded out of the "baby killers" office and immediately got on my phone and started making calls to see if I could get a "real" Obstetrician to do what needed to be done. Low and behold within an hour, I found one, but he was on vacation until Monday, so I chose to wait. We went back home, me still visibly pregnant and completely unconsolible. By this time, my parents had made the drive from North Carolina and had safely made it to my sisters house, so we went there. I just cried and cried over the loss of the baby and I was still so upset that the doctor almost touched me. I was completely shattered. We spent the weekend pretty much in hiding. We stayed home and I didn't leave the house again until Monday morning when we went to meet with the new doctor. My mom went with us. First thing the doctor did was have us escorted back into his office to talk. His nurse seated us, the doctor walked in and I felt a calm come over me. The first thing I noticed, he was wearing a gold chain with a star of David pendant on it. I knew right then I was going to be treated by a holy man, a man of honor, of dignity and respect. That it was. He handled the situation with complete grace and complete understanding. He explained that my baby would be treated with respect the entire time and he would even baptize the baby for me. As hard as the situation was, he never once gave me any reason to feel uncomfortable.
After the procedure was said and done I was told I would hear something within six weeks as to the gender of the baby and a potential cause of death. After several, long weeks the call finally came, it was a girl and she died because a blood clot, most likely due to my factor five, got into the umbilical cord and cut off everything to her.
Her name would have been Emma Marie and yes, she was baptized, I have a paper to prove it. My angle in heaven.
Friday, May 17, 2019
Making Plans
Making plans and having FMD is nearly impossible. As I have been told for a number of years, sometimes the best laid plans go straight to hell. And it is true! Every time I attempt to make plans, whether it be to go out to lunch or dinner, go do something for a day or even just decide that I will do laundry on a certain day becomes a challenge. I never know how I am going to feel and what the day will bring. I am a spontaneous person in general, so doing things on the fly or changing plans at the last minute is not really that big of a deal in "normal life". I knew I wold always still be able to do what it was I had planned, it was just a matter of changing things around to adapt.
With FMD, it is so different. I am so prone to having days that are a wash that I have become used to just doing what I am able to, spur of the moment and would rather not make plans, unless those plans are ten minutes from then, and even then I sometimes have to change them.
I manage on days when there are things that I just have to do. I adapt to what I need to. I may look like hell and have to use my cane to steady myself, but I get there. I do have a few friends that I can call at the last minute and say to them that I am feeling good at that monet and if we are going to do anyhting, now is the time, as in right now! I have missed weddings, funerals, birthdays and a few holidays because I just can't get out of bed.
I do go to a local private club one or two times a week because it is an outlet for me. It is a place I can go spur of the moment and know there will always be someone to talk to. The patrons have gotten used to seeing the many sides of "me". They see when I am having a really good day and I am all snazzed up, they see me on so so days when I at least throw on some lipstick and try to look nice, then there are the days that I just can't, but I need to get out of the house and I show up in whatever I threw on to wear, hair barely combed, big black circles around my eyes, my droop lip and we all know with a droop lip comes a speech impediment. But hey they all get it. Nobody really says anything about it, which is great for me. It is my no judgment, who cares, we got this zone.
The club is the "Cheers" in my life. Several of the patrons have given me their phone number, so if I am having a bad day or just want to let loose, I can without the worry of driving, I can drive most of the time, but I try to stay local, some days I just can't get my body to work in unison and I need a ride, so it makes it really nice. The patrons are also people I have known for many years, most of them knowing me before my ilness, because I would usually stop in after a long day of working one of my jobs. They are people who just get me. They get that I am not as good as I once was and that is ok for them. They are the kind of people who know when I am down and they pick me up. They know if I only have a little bit of money, so they will buy me a drink or sometimes two. I don't have too many drinks as I am on too many different medications.
Recently, I have been known to show up with some sort of food on a Saturday evening, the club doesn't serve a regular menu of food, so it's ok. I show my appreciation through food. Feeding people, good, homemade food is how I show the "love" and appreciation. It is another way for me to thank people without having to say it over and over again and again.
Yes, my daughters father and I are a bit on the outs and have been for quite sometime now, so I mostly go out and get out of the house when she is with him.
With FMD, it is so different. I am so prone to having days that are a wash that I have become used to just doing what I am able to, spur of the moment and would rather not make plans, unless those plans are ten minutes from then, and even then I sometimes have to change them.
I manage on days when there are things that I just have to do. I adapt to what I need to. I may look like hell and have to use my cane to steady myself, but I get there. I do have a few friends that I can call at the last minute and say to them that I am feeling good at that monet and if we are going to do anyhting, now is the time, as in right now! I have missed weddings, funerals, birthdays and a few holidays because I just can't get out of bed.
I do go to a local private club one or two times a week because it is an outlet for me. It is a place I can go spur of the moment and know there will always be someone to talk to. The patrons have gotten used to seeing the many sides of "me". They see when I am having a really good day and I am all snazzed up, they see me on so so days when I at least throw on some lipstick and try to look nice, then there are the days that I just can't, but I need to get out of the house and I show up in whatever I threw on to wear, hair barely combed, big black circles around my eyes, my droop lip and we all know with a droop lip comes a speech impediment. But hey they all get it. Nobody really says anything about it, which is great for me. It is my no judgment, who cares, we got this zone.
The club is the "Cheers" in my life. Several of the patrons have given me their phone number, so if I am having a bad day or just want to let loose, I can without the worry of driving, I can drive most of the time, but I try to stay local, some days I just can't get my body to work in unison and I need a ride, so it makes it really nice. The patrons are also people I have known for many years, most of them knowing me before my ilness, because I would usually stop in after a long day of working one of my jobs. They are people who just get me. They get that I am not as good as I once was and that is ok for them. They are the kind of people who know when I am down and they pick me up. They know if I only have a little bit of money, so they will buy me a drink or sometimes two. I don't have too many drinks as I am on too many different medications.
Recently, I have been known to show up with some sort of food on a Saturday evening, the club doesn't serve a regular menu of food, so it's ok. I show my appreciation through food. Feeding people, good, homemade food is how I show the "love" and appreciation. It is another way for me to thank people without having to say it over and over again and again.
Yes, my daughters father and I are a bit on the outs and have been for quite sometime now, so I mostly go out and get out of the house when she is with him.
Today has been one of the FMD kind of days that I hate.
Yesterday, I somehow managed to have a wonderful day with my daughter, even though it was a very symptomatic day. It started when I dropped her off at preschool for tye dye day, they tye dye a shirt at the end of the year. I was asked to stay and help as they were shorthanded some parents. The preschoolers had a blast. We then went to lunch with another parent and her little girl and the girls had a ball. One of the lessons the children learned was how to mix food coloring with water to make different colors, so of course Mary and I had to go and get some clear cups and some food coloring so she could show off what she had learned about color.
Needless to say, three stores and about four hours later, we finally made it home. Mary played with the colors and then we went to the local playground where she played hard. She fell asleep by seven pm. I guess I had wore her out pretty good!
I stayed up and caught up on some shows I had missed and had recorded and got to bed around eleven pm. I woke up this morning to swelling in my face and my limbs and could hardly walk, that is usually a good sign of a really bad day ahead.
It is common for those of us who suffer with FMD to have days here and there that are just a complete wash, meaning it feels like you are coming down with the flu. Every muscle in m body hurts, I get a headache and hot flashes and chills. I am just exhausted. Thankfully Mary's dad took a day off today so I could sleep most of the day, which I did. These are days of zero appetite, an just fluids are a godsent. Nothing other than rest and sleep can get me through a day like this.
These types of days are not an often occurrence, usually three to four times a month, but when they rear there ugly face, it is just awful and makes you remember why you cannot make plans in this life and makes it extremely difficult to hold a job.
Yesterday, I somehow managed to have a wonderful day with my daughter, even though it was a very symptomatic day. It started when I dropped her off at preschool for tye dye day, they tye dye a shirt at the end of the year. I was asked to stay and help as they were shorthanded some parents. The preschoolers had a blast. We then went to lunch with another parent and her little girl and the girls had a ball. One of the lessons the children learned was how to mix food coloring with water to make different colors, so of course Mary and I had to go and get some clear cups and some food coloring so she could show off what she had learned about color.
Needless to say, three stores and about four hours later, we finally made it home. Mary played with the colors and then we went to the local playground where she played hard. She fell asleep by seven pm. I guess I had wore her out pretty good!
I stayed up and caught up on some shows I had missed and had recorded and got to bed around eleven pm. I woke up this morning to swelling in my face and my limbs and could hardly walk, that is usually a good sign of a really bad day ahead.
It is common for those of us who suffer with FMD to have days here and there that are just a complete wash, meaning it feels like you are coming down with the flu. Every muscle in m body hurts, I get a headache and hot flashes and chills. I am just exhausted. Thankfully Mary's dad took a day off today so I could sleep most of the day, which I did. These are days of zero appetite, an just fluids are a godsent. Nothing other than rest and sleep can get me through a day like this.
These types of days are not an often occurrence, usually three to four times a month, but when they rear there ugly face, it is just awful and makes you remember why you cannot make plans in this life and makes it extremely difficult to hold a job.
Monday, May 13, 2019
Symptomatic Days
Symptomatic days are defined as days when I experience more symptoms than others. They are the days I dread the most. Sometimes I will get up in the morning and just know it is going to be a rough day, other times I wake up feeling great, then all of the sudden, out of nowhere, I am extremely symptomatic.
Symptomatic days vary. About once a week I will have a day or days, when I feel just about every symptom I could possibly have. I do have days, sometimes several in a row with very minimal symptoms. Everyday I experience pain or discomfort, it has just become more tollorable.
My personal symptoms with FMD are facial droop, changes in voice and speech, short term memory loss, anxiety, nausia, loss of appetite, tremors in my hands and face, muscle twitching, muscle pain (it feels as though my body is being pulled in opposite directions), pain in the arches of my feet, inability to walk without assistance, almost full loss of dexterity in my hands, headaches, blurred vision, hot flashes, cold flashes, flu like symptoms and just overall exhaustion. I think I have covered most of the symptoms, if I am missing any, will add them as I think of them.
Yes, I have a permanent handicap parking hanger for my vehicle. I own a cane and I have been known to use an electric scooter to get around in large settings. I am slowly turning into a little old lady.
Some days you will see me and I will appear to be fine, other days you see me and you can tell something is wrong. I try to hide it sometimes, but I kinda gave up on that because there is just no use. People are going to notice. I don't need special treatment, but sometimes, I need special care and adaptations. So far I can manage my own care. The things I do need help with, I ask for help with.
Symptomatic days vary. About once a week I will have a day or days, when I feel just about every symptom I could possibly have. I do have days, sometimes several in a row with very minimal symptoms. Everyday I experience pain or discomfort, it has just become more tollorable.
My personal symptoms with FMD are facial droop, changes in voice and speech, short term memory loss, anxiety, nausia, loss of appetite, tremors in my hands and face, muscle twitching, muscle pain (it feels as though my body is being pulled in opposite directions), pain in the arches of my feet, inability to walk without assistance, almost full loss of dexterity in my hands, headaches, blurred vision, hot flashes, cold flashes, flu like symptoms and just overall exhaustion. I think I have covered most of the symptoms, if I am missing any, will add them as I think of them.
Yes, I have a permanent handicap parking hanger for my vehicle. I own a cane and I have been known to use an electric scooter to get around in large settings. I am slowly turning into a little old lady.
Some days you will see me and I will appear to be fine, other days you see me and you can tell something is wrong. I try to hide it sometimes, but I kinda gave up on that because there is just no use. People are going to notice. I don't need special treatment, but sometimes, I need special care and adaptations. So far I can manage my own care. The things I do need help with, I ask for help with.
Having an illness and maintaining friendships
I am finding that one of the hardest things when you become diagnosed with an unusual or even common disorder is you find out who your friends are. Having to live with something completely unusual, or relatively unheard of, is not easy to begin with, let alone have to face the non-believers, those are the friends that are always the monday morning quarterback, wanna be doctors who feel they all of the sudden possess the knowledge to attempt to diagnose you themselves and offer you advise on treatment and how they would treat it if it were to happen to them. They also in their own, ignorant manner, will actually take the time to explain to you that you are somehow faking all of this just for attention, pity or handouts. A scam of sorts. It makes one wonder if they are just completely out of touch with reality or they just can't accept this has happened to you. Either way, it is just plain wrong. It is one thing to have an opinion and suggestions, it is another ball game to be completely ignorant. The thing about having an illness and posting about it on social media is that those who are the non believers have the power to bully you from the privacy of their own home, from behind a keyboard.
Bullying of any kind, in at any age, in any setting is just plain unacceptable. Yes there is this thing called free speech, but some choose to take it over the top. When someone has a disability of any kind, whether it be long term or short term, it is never acceptable to bully.
I chose to write about this because it happened to me. I am the mother of three and a grandmother, and on Mother's Day, of all days, a few of my so called friends decided it would be funny to post something on social media and make sure I was tagged in it. I will say the person who posted it was someone who had been my friend for many years, and had sent me some messages recently that were completely uncalled for and out of line. Not only was the post ignorant, another so called friend made a comment on the post that was completely false. I actually damn near fell out of my chair upon seeing it.
I really shouldn't have to remind people that not all illnesses are the same. They may be classified under the same category or even have the same name, but that does not mean they all act the same.
Instead of using energy to focus on negatives, use that energy to focus on positive.
Focus on what you do have and who your real friends are. The real friends are the ones standing in the background cheering you on. Weed out the good and the bad people from your life. Whether you are battling an illness or not, you need positive influence around you.
Bullying of any kind, in at any age, in any setting is just plain unacceptable. Yes there is this thing called free speech, but some choose to take it over the top. When someone has a disability of any kind, whether it be long term or short term, it is never acceptable to bully.
I chose to write about this because it happened to me. I am the mother of three and a grandmother, and on Mother's Day, of all days, a few of my so called friends decided it would be funny to post something on social media and make sure I was tagged in it. I will say the person who posted it was someone who had been my friend for many years, and had sent me some messages recently that were completely uncalled for and out of line. Not only was the post ignorant, another so called friend made a comment on the post that was completely false. I actually damn near fell out of my chair upon seeing it.
I really shouldn't have to remind people that not all illnesses are the same. They may be classified under the same category or even have the same name, but that does not mean they all act the same.
Instead of using energy to focus on negatives, use that energy to focus on positive.
Focus on what you do have and who your real friends are. The real friends are the ones standing in the background cheering you on. Weed out the good and the bad people from your life. Whether you are battling an illness or not, you need positive influence around you.
Friday, May 10, 2019
How to work with FMD
Having had a short conversation with a friend, who is in my eyes, inspirational, I have decided that I will no longer allow my illness to keep me down. I had applied for SSI and was denied, even though eight doctors said I can’t work, I refuse to be a troll. I have a plan. My plan is to take my skills as a writer and use them. Sometimes life experiences are just as good, if not better than a college degree. I choose to write about my experiences, not only with FMD, but my life in general. Some of you will find it interesting, some will not, and that is ok. I have set up a Go Fund Me page. Yes, I know, those pages get on my nerves also, but I need help to get back on my feet. This living on nothing and having needs has to stop. I need to move on. I’m not looking at it as a hand out, rather I am looking at it as a hand in, a hand in to help. A hand out not to say here you are, now go away, a hand in as in I’m holding out my hand, shake it and give me a hug and wish me the best in this hellacious journey. I am attaching the link if you wish to help. Thank you
https://www.gofundme.com/manage/qefxj-functional-movement-disorder
https://www.gofundme.com/manage/qefxj-functional-movement-disorder
Tuesday, May 7, 2019
How long could this take?
I arrived at Mercy Hospital around 8pm as a direct admission, as a transfer patient, so I should be resting, at least somewhat quietly in a room soon, so I had hoped. Around 11pm my mom and my sister, who is in the medical field, arrived, exhausted from a long trip, but as anxious as my son and were to find out what was going on. I finally convinced them to go to their hotel and rest for the night around 2am. It was 3am, the bells, alarms and ER chatter were just about on my last nerve. I was still laying on a very uncomfortable ER gurney, when I explained to the nurse that my symptoms had mostly subsided and I asked her if I could please get up and use the bathroom, she agreed to let me walk over to the bathroom on my own. I came out of the bathroom, walked back to my room in the ER and to my surprise, there it was, like heaven, a bed! A real hospital bed, with lots of pillows and blankets, and turned down to perfection! My nurse was waiting for me to come back and explained there were no rooms in the hospital for me as of yet, so I was spending the night in the ER, but she at least wanted me to be somewhat comfy and it was. I finally got a few hours of sleep, off and on, with all the bells, alarms and codes going off, and let us not forget the gunshot victim that was brought into one of the trauma rooms across the hall from me. Finally at 7am a nurse practitioner from the stroke team came in and explained they were going to do an angiogram of my corroded artery. Around 10am, they finally came and got me for my procedure. The angiogram consisted of a needle with a tube attached being shoved into my groin until it finally worked itself up to my artery in question. That’s when they saw it. A tiny tear. Not big enough to fix, but enough to be a bit of an issue. The tear was on the inner wall of the artery, so there was no real risk of it breaking through and bleeding out, but I was admitted for a few days anyway just to make sure. I went for a check up several months later and it was discovered that the tear had healed on its own. No intervention needed. The strange thing is that these tears are common with some sort of trauma such as a car accident or strangulation. It can also happen by having your neck adjusted or cracking it yourself. Who knows? I’m just glad it fixed itself.
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